CHARLES BONNET SYNDROME (CBS) BILLING CODE

In 2019, Charles Bonnet Syndrome (CBS) received a code from the World Health Organization ICD 11. CBS is now considered a medical condition in its own right. Reimbursable billing codes for the medical community are H53.16.8 and R44.1. However, there is a crucial need for CBS to receive it’s own reimbursable medical code.

IMPORTANT INFORMATION:

CBS is NOT a mental health condition. It’s estimated that millions of people in the US alone live with Charles Bonnet Syndrome.

We are not medical professionals. We are a charitable organization providing education, support and advocacy for people living with CBS and their caregivers.

WHAT IS CHARLES BONNET SYNDROME?

The vivid, silent visual hallucinations, which some people experience after losing a percentage of their vision or going blind after being sighted, is a condition called Charles Bonnet Syndrome (CBS). CBS does not discriminate; it can affect anyone at any age. It knows no gender, age, race, ethnicity, or lifestyle. It also presents with NO warning. The person affected has no time to prepare for this life-altering condition, no time to be informed, no time to understand what may be happening to them and share it with their loved ones. Presently, the medical community offers limited resources and servcies for people with CBS and their caregivers. Additionally, family members and caregivers are thrust into a caregiving role with little guidance on how to help the person affected with CBS or where to turn to for help.

When you have full sight, there are messages that run constantly from the retina to the visual cortex in the brain. As sight diminishes, these messages slow down or stop entirely, but – for some reason, not yet understood – the brain does not slow down, it fires up and creates its own images. What is seen depends on which part of the brain is firing.

It is estimated that millions of people in the US are living with CBS and it is very important to remember that CBS is NOT a mental health condition, it is due entirely to sight loss. This loss can be caused by any one of the myriads of eye diseases – stroke, cancer of the eye, accidents or injuries to the eyes, diabetes, multiple sclerosis – any condition that can cause damage to the optic nerve. CBS is often misdiagnosed as Schizophrenia, Dementia, Lewey Body Dementia, or Severe Bipolar Disorder.

Sight loss itself can cause anxiety, fear, and grief, but when CBS is added, the isolation – even from family members and friends – can exacerbate the downward turn in quality of life. Living in a world of uninvited images – even if they are pleasant – impacts the individual’s activities of daily living. 

Confiding in someone about the hallucinations and how they make one feel can certainly help. Mary Carmel’s Light offers a helpline. We provide an outlet for individuals who live with CBS, their families, and caregivers. Our support groups allow individuals to share their experiences and share coping strategies. Most importantly, we provide a safe, confident, and non-judgmental space where people living with CBS can speak openly and freely about their experiences. 

Mary Carmel’s Light can help people living with CBS, as well as their families and caregivers. We can help you find a suitable doctor who can hopfully provide a proper diagnosis. We can connect you with Dr. Gary Cusick, who will provide you with information to help give you a better understanding of CBS and lend support for what you are experiencing. We offer support groups, a podcast link, a helpline to assist you when you feel overwhelmed or your caregiver needs support. We can assist you in connecting with local services in your area to help meet your needs.

Hallucinations can often be more intense during quiet moments, when the sun begins to set, and when individuals feel lonely or isolated. Certain types of therapy have been proven successful in redirecting individuals with CBS such as music therapy, audio tapes, pet therapy, light therapy, and rapid eye movement. 

During the lockdown caused by Covid 19, people living with CBS reported more frequent episodes of hallucinations and saw more frightening images, proving that isolation and stress may exacerbate CBS. Fever caused by infections like UTIs and hyponatremia (low sodium concentration in the blood) may also cause a worsening of CBS.

Establishing where the hallucinations occur more often, maybe in a particular part of the home or landscape, helps. It can be extremely distressing to have your life disrupted constantly by CBS hallucinations, but there are measures that can be taken to attempt to dispel the hallucination when it occurs. However, everyone is different and some strategies work better than others. If the hallucination does disappear at that moment, it may return later. 

RISK FACTORS ASSOCIATED WITH CBS

FALLING:  Individuals coping with CBS may have a substantial fall risk. As the images created by the hallucinations seem very real, the individual may try to follow, avoid, run from or attack the image which could result in a fall. Individuals misdiagnosed with something other than CBS (usually Dementia, Schizophrenia, Lewey Body Dementia, or Severe Bipolar Disorder) may be given psychotropic medication that can create and/or increase the fall risk.

ABUSE/NEGLECT: CBS is a very difficult diagnosis. Not only for the individual coping with the condition, but family members and/or caregivers providing support and care for the individual with CBS. Caregivers and family members can often lose patience with individuals who are convinced their hallucinations are real – we must remember – to the individual with CBS, they are real. With proper support, the individual with CBS will learn these images are not real, simply a product of their brain firing images in front of them. 

Often, familiar relationships that may already be tense or abusive can easily cross the line and become emotionally, mentally, and physically abusive. Individuals with CBS must feel safe to report this to other family members and/or authorities without fear of retribution. 

ISOLATION:

Because CBS is often misdiagnosed as Dementia, Schizophrenia, Lewey Body Dementia, or Sever Bipolar Disorder, people will often not report their symptoms – even to their spouse – for fear of being labeled “mentally ill”. Individuals with CBS will often suffer in silence, closing themselves off from friends and family, increasing the risk of falling into a deep depression. Isolation can intensify the severity and longevity of the hallucinogenic episodes. 

SELF-HARM:

In the worst-case scenarios, an individual with CBS may feel hopeless and may harm themselves by gauging out their eyes, cutting, or committing suicide. 

HOW DO WE HELP PEOPLE LIVING WITH CBS TO DO SO WITH DIGNITY, GRACE AND INCLUSION?

• If you know someone with low vision or vision loss, provide a safe environment for them to talk about the experience of losing their sight. If they are experiencing hallucinations, take them to a doctor for treatment. Most importantly, BELIEVE THEM!
• DO NOT call them “crazy” or tell them “they are losing their minds”. If their doctors are dismissive of their situation and a possible CBS diagnosis, encourage them to seek a differential diagnosis/treatment.
• Provide the doctors treating the individual with CBS the necessary information about the syndrome so they can peoperly diagnose the condition or rule it out. 
• The CBS client should seek out a medical professional to help rule out any other mental illnesses.
• If your family member or friend is diagnosed with CBS, learn about the condition so you can understand what your loved one is experiencing. 
• Seek a support group for the individual with CBS, yourself, family members, and caregivers.
• Find a counselor that provides Cognitive Behavioral Therapy (CBT) and have the individual begin therapy as soon as possible, this can help with anxiety, fear, grief and the sudden impact of change in their lives.
• Recommend the individual with CBS and their caregivers seek grief counseling. Losing one’s vision is traumatic – life is forever changed.
• Music therapy has been known to help bring individuals out of episodes by redirecting thoughts and memories.
• Audio books have been found to bring individuals out of episodes and to redirect thoughts.
• It has been discovered (and currently being researched in the UK) that domestic and service animals are able to detect when someone with CBS is having an episode and will alert the person and redirect the individual. 
• EDUCATE and bring AWARENESS to everyone you possibly can. Knowledge is power and as a community, we need all the strength we can gather to help people living with CBS. 

STRATEGIES/COPING SUGGESTIONS TO STOP HALLUCINATIONS OR LESSEN THE SEVERITY OF IMAGES

• Reach out towards the hallucination, try to touch it or sweep your hand to brush the image away.
• Shine a flashlight upwards from below your chin, in front of your eyes (DO NOT DIRECT THE LIGHT INTO YOUR EYES)
• If sitting, try standing up and walking around the room. If standing, try sitting. 
• Walk into another room or another part of your present environment.
• Turn your head slowly to one side and then to the other. Dip your head to each shoulder in turn.
• Stare straight at the hallucination.
• Change whatever it is you are doing at that moment – turn off/turn on the television, radio, or music.
• Change the light level in the room. Make the room as bright as possible. 
• Talk with someone, a friend, family member, or caregiver. If alone, call someone. 
• Sing or whistle. 
• At night, wear a thick eye mask
• Clap your hands or snap your fingers
• Blink your eyes slowly once or twice
• Try this specific eye-movement exercise created by Professor Dominic ffytche (Medical advisor to Esme’s Umbrella and sole, globally-acknowledged expert in CBS based in the UK):

“When the hallucination begins, look from left to right about once every 15 seconds without moving your head. If the hallucination continues, have a rest for a few seconds and then repeat the eye movements. You may need four or five repeats of the eye movements to have an effect, but there is no point in continuing beyond if the exercise has no improvement or benefit.” 

• Concentrate on your breathing. Breathe in and out slowly to calm your pulse rate and/or anxiety. Count as you breathe in and out. 
• Using organic ginger in food and drink – ginger ale/tea/cookies, etc. – has been found to be helpful to some people. However, it is imperative to check with your doctor as ginger may interact adversely with certain medications. Similarly, Omega 3 supplements may be of help. Recent reports suggest CBD oil and capsules – the ones that are legal in the US – may also be of help.
• Do your best to constantly remind yourself that these hallucinations are not real, they cannot harm you or those you love.
• If the hallucinations are intolerable, please contact your doctor. Not all doctors are aware of CBS – take information with you. 
• Join a support group. In the US call Mary Carmel’s Light Helpline at 704.389.0160 and ask for `Eva Potts. 
• Reach out to the US CBS Education & Information Specialist Dr. Gary Cusick at 502.439.0398.
• Whatever you do, don’t suffer in silence. Reach out so we can help align you with support and services. 

At the present time, the only countries properly recognizing, diagnosing, researching, providing advocacy, and treating Charles Bonnet Syndrome are the United Kingdom (Esme’s Umbrella), Australia (Charles Bonnet Syndrome Foundation), and Canada (CNIB). The US must get involved as CBS treatment is critical for these individuals.

As we age, our eyesight diminishes. Not all people will experience vision loss, however, a vast majority of the US population will lose their vision. The baby boomer population alone will dramatically increase the number of individuals with CBS. We must educate ourselves, our communities, and our medical professionals about Charles Bonnet Syndrome. CBS must be normalized as a possible outcome of losing one’s vision. The immediate response is to reassure those living with CBS that they are not crazy or losing their minds – that they are not mentally ill. A cure cannot be found without understanding the cause.